Exploring the unique dynamic — its blessings and occasional hurdles — of one sibling caring for another with neuromuscular disease
In a small Detroit apartment, Sam Barash, 32, lives with and cares for his 20-year-old, soon-to-be 21, sister, Angela Barash, who is living with myotonic muscular dystrophy and myasthenia gravis. For a year now, Sam’s been his sister’s primary caregiver, waking her every four hours for medication, fixing her meals, helping her get dressed and doing everything possible to make Angela comfortable.
|Angela Barash says she's able to best express herself with her brother, Sam, who serves as her primary caregiver.|
It wasn’t Sam’s original plan — but as he puts it, “Things happen.” By that, among other things Sam is referring to the loss of his mother to cancer in 2014. Before passing, Mrs. Barash asked Sam to always be there for his sister. “I said, ‘yes,” Sam recalls. “I knew I’d have to give up a lot — like my 60-hour-a week job and a pretty active social life — but when I agreed, it came so naturally. I even surprised myself at how much I want to be here for my sister.”
Up for the challenge
Sam Barash’s life-altering decision is an increasingly common topic among American families with an adult child with a disability.
“Caring for a Sibling with a Disability,” a study conducted by the market research firm Ipsos, represents a small but telling survey of adults who do not experience a disability but have a brother or sister who does. Of those surveyed, 24 percent currently serve as the primary caregiver for their brother or sister with a disability, and one in three plan to eventually become the primary caregiver for their sibling with a disability.
Like Barash, those surveyed see the responsibility as a positive move, with a resounding 83 percent feeling “comfortable” taking over as their sibling’s caregiver and a strong 60 percent feeling “emotionally prepared.”
Such positive responses may overlap with certain additional survey findings, including the fact that six in 10 respondents feel that caring for a sibling positively impacts their quality of life — helping them to develop patience, understanding, compassion and providing perspective.
Cheryl Ruhle, 54, recently became the full-time caregiver for her identical twin sister, Sharon Corosanite, who received a diagnosis of ALS (amyotrophic lateral sclerosis). Together, the sisters live in a small one-bedroom central New Jersey apartment, sleeping in the same bedroom, just as they did as children.
Ruhle admits that every day is different, and many days bring new challenges, but overall she recognizes that caring for her sister stimulated her own emotional growth.
|Sharon Corosanite poses with her daughter, Lindsey.|
“Caring for Sharon has taught me to live in the moment,” Ruhle explains. “With ALS, there could be 10 more years of tomorrows or maybe only two years. So you can’t say, ‘Let’s do this in three months.’ You have to live for today. This perspective has helped me find so much joy in life — instead of focusing on loss.”
Blessings and hurdles
Living in the moment, Ruhle insists, doesn’t require exhaustive planning. Sometimes the most precious moments just come.
“Sharon brings the family together — that’s such a blessing. And we’re a loud, happy Italian family, so when we get together, fun follows,” Ruhle says, with a smile in her voice as she names the crew. In addition to Cheryl and Sharon, there’s Elizabeth (Libby) Hertkorn, Kelly Henry and Charles Henry. The siblings care for Sharon at various levels, each taking on what he or she can handle, although the family unit is always up for a playful gathering.
“A family picnic or dinner together aren’t huge events, but they make Sharon smile,” Ruhle continues. “Someday her smile won’t be there, but for today — when we can watch Sharon’s face light up — it’s a blessing. It’s such a beautiful smile.”
For sisters Cheryl and Sharon, when there’s a smile, laughter is always close behind. “Caring for my sister has given me a new appreciation for laughter,” Ruhle says. “It’s the best medicine! Not just for Sharon, but for me, too!”
While Barash and Ruhle find that caring for their respective sibling positively impacts their quality of life, they also admit that being a primary caregiver comes with hurdles.
“Many caregivers feel frustrated from time to time, and I can’t say it enough: That’s OK, and it’s perfectly natural,” explains MDA Health Care Service Coordinator Marissa Lozano, who’s based near Philadelphia. “It’s important to have a support group, a friend, a therapist or someone you can talk to, and a safe place to vent.”
In Ruhle’s case, she attends an MDA support group led by Lozano. “It gives me a chance to express feelings that I can’t explain to anyone else. In the support group, everyone understands right away.” It is, Ruhle adds, like entering a room overflowing with camaraderie — but never sympathy, which Ruhle stresses she does not want or need.
In addition to emotional hurdles, a sibling caring for a brother or sister with chronic or progressive conditions may hit financial obstacles. For Barash, who needed to quit his job to care for Angela, the solution was to become his sister’s paid caregiver. He reached out to LifeLong Advocacy, an organization created to help individuals with developmental disabilities. Sam attended classes through LifeLong Advocacy, and after earning certification as a qualified caregiver, he now cares for his sister and also earns a salary. (In many states, Medicaid and Medicaid-related state programs offer options for individuals to earn compensation to supplement or replace other income when working as a caregiver for a loved one. Local MDA offices may be able to help locate additional resources.)
Ruhle, who is on family leave while caring full-time for Corosanite, hopes her sister will soon qualify for a daytime nurse so she can return to work and continue caring for her sister during evenings and weekends.
“Some days, I sit and make phone call after phone call. It’s been a struggle,” Ruhle admits, “But I’ve had a lot of help from Sharon’s neurologist, and MDA and Marissa [Lozano], of course. She’s been wonderful.”
Care for caregivers
|Sarah Coglianese with her sister, Liz, and Sarah's daughter. Photo by Rob Goulding.|
Open, honest communication is also a hot topic for Sarah Coglianese, 36, who received a diagnosis of ALS in 2012. Sarah lives in the San Francisco area with Scarlett, her 5-year old daughter; her husband, Rob Goulding; and the family’s new puppy, Otto. Liz Coglianese, Sarah’s 32-year-old sister, lives around the corner with her husband and toddler son. Even though Sarah has a daily assistant, Liz plays a major role in her sister’s care.
While Liz is there 100 percent for her sister — and Sarah knows this in her heart — rough patches occasionally bubble up. “I sometimes feel guilty, because I know this isn’t how Liz and I expected things to play out,” Sarah explains. “I’m not mad at my sister; I’m mad at the situation. I fear that she’ll get sick of taking care of me. I know that is not true, but it’s a pretty real feeling.”
The solution, Sarah adds, comes down to a few from-the-heart discussions with her counselor and also with her sister. Talking to her counselor, in a safe place, defuses her anger, so she can compassionately talk to Liz.
“I tell her that I feel bad about not being able to help out more,” Sarah says, “and that I can see her frustration with all the work she has to do. It doesn’t change anything, but I do think it helps when Liz knows how much I appreciate her.”
Lozano strongly agrees that seeking outside, objective counseling can help those in similar sibling-caregiver relationships.
“It gives the individual a better perspective as to what the caregiver is feeling, which can tighten the bond between the caregiver and that person,” Lozano notes. “That’s why we recently launched two support groups, one for caregivers and one for the individuals living with a neuromuscular diagnosis. For those in the latter who are no longer able to speak, we offer support through an online community, since many of these individuals can share their thoughts by typing out their feelings and frustrations.”
For both the caregivers in this dynamic and their siblings, life at times may be frustrating, a struggle or simply a joy. So finding ways to cope and vent about challenges in a healthy way, and truly cherish the good moments, is the key to maintaining individual peace of mind and a positive sibling relationship, they say. Aside from that worthy goal, there’s just one thing that tends to annoy Sam Barash.
“When I talk to anyone about my choice to care for Angela, they always end the conversation with the same thing. They say, ‘Good luck,’” he notes. “But luck has nothing to do with my choice. We make it through each day because we love each other. We’re family.”
Donna Shryer is a freelance writer in Chicago.
Editor's note: Sharon Corosanite lost her brave battle with ALS shortly after being featured in this article.
To help caregivers embrace the joys and jump the hurdles when it comes to caring for a loved one, MDA provides a rich pool of resources, including caregiver-related support groups across the county. Another valuable resource is MDA’s online caregiver section, which provides helpful information and resources to help support family caregivers. Be sure to contact your local MDA office to locate other resources in your area.
Additional organizations and programs to consult for caregiver support and services include:
Caring for a sibling comes with a unique dynamic, explains MDA Health Care Service Coordinator Marissa Lozano. “Adult siblings argue from time to time — just like they did 20 years ago in the sandbox. It’s a fact that has nothing to do with whether or not one sibling has a disability.”
Many siblings experience firsthand this “spirited” sibling dynamic with every family Thanksgiving dinner or birthday gathering. Experts suggest that when adult siblings get together, it’s natural to slip into old roles. They may assume labels long outgrown, like the “good” one, the “troublemaker” or the “micro-manager.” That can pull old feelings to the surface, because, as Lozano explains, “You let your guard down around family. That can make the good times even better, but you’re also likely to have feisty times, too.”
There is no simple solution to address the latter, although, as Lozano suggests, it helps to recognize these tendencies for what they are: yesterday’s news. Instead, both siblings should focus on the gift they’re giving each other today. And if this feels like an insurmountable goal, it may be time to seek professional counseling.
“Everybody needs help from time to time,” Lozano says. “It shows great strength when you seek help. After all, if you don’t take care of yourself, you can’t take care of your sibling. If you’re the one being cared for, you risk losing so much shared happiness with someone who loves you so much.”
According to a study conducted within the Department of Disability and Human Development at the University of Illinois at Chicago, an estimated 76 percent of individuals with developmental disabilities live at home with their parents. In 25 percent of these households, the caregiver is age 60 or older, and the average age of the adult child with a disability is 38 years.
It’s important to note that because “developmental disabilities” are a group of conditions due to an impairment in physical, learning, language or behavior areas, this study covers a population far broader than the MDA community. But its findings do shed light on common family dynamics between caregivers and care recipients.
That said, two other facts impact the historically traditional path whereby parents care for an adult child with disabilities:
Combine these two realities, and the response is an upswing in other family members, often siblings, assuming the role of primary caregiver for a loved one with a disability.